Good Evening!
Hope you all had a great day! Riley was able to get out of the room today for a swallow study. She had been having trouble with her oral/bottle feedings and so the team wanted to make sure she wasn't aspirating any of the milk. As it turns out she was aspirating a small amount during feedings. They tried to give her thickened milk to see if that would help and it didn't. Unfortunately for kids like Riley, it is difficult for them to figure out how to coordinate the sucking, swallowing, and breathing to allow them to eat.
We will be giving her another week or two before trying to feed her orally again to give her time to grow and mature. Don't worry, she still gets her full feeds via her NJ tube.
On a very happy note, I had met a family in the MSICU whose son had been there since just after birth. He is now over 2 years old. They have received the happy news that they are being discharged Thursday to a local hospital in South Carolina. It was amazing to see the strength of this family where the mother lived here in the hospital, and dad lived in SC with their daughter for the past two years. I am so excited for them, and can't even imagine the joy they are feeling right now!
With this setback in feeding, we will obviously be here for several more weeks, but truly all that matters is that we will be bringing her home at some point. What can be better than that?
Riley MRI
Riley's First Picture
Tuesday, March 29, 2011
Monday, March 28, 2011
Switch Again
Well, Brian and I returned to our "normal" roles yesterday afternoon. Me with Riley and Brian with Chase. I had a wonderful time with the little man and I know Brian really enjoyed being out here with our little girl.
There are a few themes that have remained as we have posted here. One being that Riley has shocked and amazed us all with her resilience and strength. The 2nd being how wonderful our family and friends have been, and the third being how amazing of a man Brian is. This third one was truly emphasized to me upon my return this weekend. From moment one, the nurses raved about how awesome of a man and father Brian is. They went on to tell me how they dont get many fathers who stay at all, much less ones who are so comfortable being fathers (who do everything their kids need and more). They all said how wonderful it was to see Brian loving holding her and caring for her. As one nurse said: "you are so lucky." "Yes" I replied "I know."
In the wake of a terrible accident that has affected the Crum side of the family, I am reminded all the more to cherish the time and love I have for our family. Our thoughts and prayers are with them all through this difficult time.
On a happy note, Riley was so happy to see her mommy again yesterday that she smiled for the first time. Here are a couple pictures of our girl.
If there is one thing we all have learned through the past several weeks, it is to cherish and appreciate the time we have with the ones we love. Take a moment today to do so...
There are a few themes that have remained as we have posted here. One being that Riley has shocked and amazed us all with her resilience and strength. The 2nd being how wonderful our family and friends have been, and the third being how amazing of a man Brian is. This third one was truly emphasized to me upon my return this weekend. From moment one, the nurses raved about how awesome of a man and father Brian is. They went on to tell me how they dont get many fathers who stay at all, much less ones who are so comfortable being fathers (who do everything their kids need and more). They all said how wonderful it was to see Brian loving holding her and caring for her. As one nurse said: "you are so lucky." "Yes" I replied "I know."
In the wake of a terrible accident that has affected the Crum side of the family, I am reminded all the more to cherish the time and love I have for our family. Our thoughts and prayers are with them all through this difficult time.
On a happy note, Riley was so happy to see her mommy again yesterday that she smiled for the first time. Here are a couple pictures of our girl.
If there is one thing we all have learned through the past several weeks, it is to cherish and appreciate the time we have with the ones we love. Take a moment today to do so...
Saturday, March 26, 2011
Weekend Update
Hi All,
Chase has had a cold this week so Sandy and I decided it would be better if he stayed home this weekend. I wanted to spend some time with Riley, so I drove out to Boston yesterday afternoon and Sandy drove back home to spend the weekend with Chase.
Some updates on Riley. The doctors are slowly weaning her off Ativan - this will be done over the next couple of weeks. They have also switched all of her medications from her PICC line over to her feeding tube. If all goes well in the next couple of days, the PICC line will be removed. This is one less source of infection, and Daddy won't have to be worried about yanking it out accidentally...even though it's sutured into her leg...I'm just a wimp about it. Riley has also started to take some feeds by mouth. She just finished 10cc of milk from one of our Dr. Browns bottles, gave me a little burp, and now she's snoozing happily. The nurses and doctors are very very happy that she is so willing to take a bottle. Often, babies that are intubated for long periods develop oral aversions, but this doesn't seem to be the case with Riley. Assuming that she can learn to breath more efficiently while eating larger amounts of food, it will make oral feeding and weight gain much easier for her and us.
Chase has had a cold this week so Sandy and I decided it would be better if he stayed home this weekend. I wanted to spend some time with Riley, so I drove out to Boston yesterday afternoon and Sandy drove back home to spend the weekend with Chase.
Some updates on Riley. The doctors are slowly weaning her off Ativan - this will be done over the next couple of weeks. They have also switched all of her medications from her PICC line over to her feeding tube. If all goes well in the next couple of days, the PICC line will be removed. This is one less source of infection, and Daddy won't have to be worried about yanking it out accidentally...even though it's sutured into her leg...I'm just a wimp about it. Riley has also started to take some feeds by mouth. She just finished 10cc of milk from one of our Dr. Browns bottles, gave me a little burp, and now she's snoozing happily. The nurses and doctors are very very happy that she is so willing to take a bottle. Often, babies that are intubated for long periods develop oral aversions, but this doesn't seem to be the case with Riley. Assuming that she can learn to breath more efficiently while eating larger amounts of food, it will make oral feeding and weight gain much easier for her and us.
Wednesday, March 23, 2011
Out of the MSICU
Hello All,
We are happy to report that Riley is out of e ICU and is now on the floor to work towards going home! We are so excited for this development as it means that the end is near (about 4 weeks out per our Drs estimate). Riley has been starting to wean off the Ativan and is continuing to have mommy's milk put into her NJ tube. We have also weaned the oxygen from 2L to 1.5L today. Riley has been a little stuffy so she has a constant "humidifier" going as well as nebulizer treatments 4 times a day.
The floor is very different from the ICU. We are able to take a more active role in Riley's care. We can change diapers and hold Riley whenever we want which is such a huge reward! She graciously added to that reward by giving us a dirty diaper today that even made the nurses go "oh my god!". I think she thought it was funny.
Daddy came for a visit today, but is back with Chase now. We are two lucky ladies (and one lucky dude) to have such an awesome man in our lives!
We are happy to report that Riley is out of e ICU and is now on the floor to work towards going home! We are so excited for this development as it means that the end is near (about 4 weeks out per our Drs estimate). Riley has been starting to wean off the Ativan and is continuing to have mommy's milk put into her NJ tube. We have also weaned the oxygen from 2L to 1.5L today. Riley has been a little stuffy so she has a constant "humidifier" going as well as nebulizer treatments 4 times a day.
The floor is very different from the ICU. We are able to take a more active role in Riley's care. We can change diapers and hold Riley whenever we want which is such a huge reward! She graciously added to that reward by giving us a dirty diaper today that even made the nurses go "oh my god!". I think she thought it was funny.
Daddy came for a visit today, but is back with Chase now. We are two lucky ladies (and one lucky dude) to have such an awesome man in our lives!
Sunday, March 20, 2011
A Letter to My Daughter
Dear Riley,
One month ago I cried on your father's shoulder not knowing what to expect in the coming days and weeks. We had found out that you were almost definitely going to be on a heart lung bypass and there was a chance you would not survive. We had planned for the worst months beforehand, but I'm not sure I will ever be able to describe how hard those last few days before you were born were. "How is it possible to love someone so much that you have never met?" I wondered.
At 9am on Sunday February 20th you came into this world without a sound. The nurses and doctors intubated you and after a quick kiss from me you were rushed up to the NICU with Daddy. I had the most wonderful nurse who made sure she brought me up to see you before you went to Children's, and it was there that we were able to take our first pictures together. We went through some tough days in the first couple weeks but there was no better day than when we were told that we would be taking you home someday. Daddy and I celebrated with the most amazing high-fives and hugs you've ever seen.
Here we are, a month later and so much has happened in your young life. You underwent surgery to move your organs and patch your diaphragm, you have undergone countless echos and x-rays, you have been suctioned far more times than you will ever want to remember, you have had and beat your first infection, and you have been poked and prodded way too much.
Don't think that hard work and a tough life doesn't come without rewards. In the past month, you have also been extubated, weaned off most of your meds, gotten your A line out, peed larger diapers than your brother, learned that you LOVE your pacifier, eaten 11cc of milk from a bottle, made all sorts of new friends, and most importantly you have amazed your doctors, nurses and parents with your progress.
You are our tiny miracle and we cannot wait for the exciting weeks to come. We are hopefully moving out of the ICU this week and going to the floor to work on eating and weight gain and looking towards taking you home.
Mommy, Daddy and Chase love you big girl. Happy 1 month!
One month ago I cried on your father's shoulder not knowing what to expect in the coming days and weeks. We had found out that you were almost definitely going to be on a heart lung bypass and there was a chance you would not survive. We had planned for the worst months beforehand, but I'm not sure I will ever be able to describe how hard those last few days before you were born were. "How is it possible to love someone so much that you have never met?" I wondered.
At 9am on Sunday February 20th you came into this world without a sound. The nurses and doctors intubated you and after a quick kiss from me you were rushed up to the NICU with Daddy. I had the most wonderful nurse who made sure she brought me up to see you before you went to Children's, and it was there that we were able to take our first pictures together. We went through some tough days in the first couple weeks but there was no better day than when we were told that we would be taking you home someday. Daddy and I celebrated with the most amazing high-fives and hugs you've ever seen.
Here we are, a month later and so much has happened in your young life. You underwent surgery to move your organs and patch your diaphragm, you have undergone countless echos and x-rays, you have been suctioned far more times than you will ever want to remember, you have had and beat your first infection, and you have been poked and prodded way too much.
Don't think that hard work and a tough life doesn't come without rewards. In the past month, you have also been extubated, weaned off most of your meds, gotten your A line out, peed larger diapers than your brother, learned that you LOVE your pacifier, eaten 11cc of milk from a bottle, made all sorts of new friends, and most importantly you have amazed your doctors, nurses and parents with your progress.
You are our tiny miracle and we cannot wait for the exciting weeks to come. We are hopefully moving out of the ICU this week and going to the floor to work on eating and weight gain and looking towards taking you home.
Mommy, Daddy and Chase love you big girl. Happy 1 month!
Tuesday, March 15, 2011
Tuesday Update!
Hi All,
Sorry for the delay getting an update to you all. We've been busy since the last one!! Where to start. Riley says hi!
Well, when Riley did her first blog post on Thursday, the doctors were starting to talk seriously about taking her vent tube out. Unfortunately she wasn't quite ready yet. The doctors decided that they wanted to try to wean her off of the nitric oxide over the weekend. She has been on the NO, along with oxygen, since birth. A broncho-dilator, it helps with her gas exchange and pulmonary pressures. Over the weekend, the doctors progressively halved her NO levels: 20, 10, 5, 2,5, 1 and then...none! Along the way, they had ultrasounds done on her heart to see what the effects of the reduced NO were on her pulmonary pressures. The results were great; the ultrasounds showed that her pulmonary pressures were about where they should be for a non-CDH baby, despite the reduced NO levels.
While the weaning was going on, Grandma and Poppa Trask brought Chase out for a visit over the weekend. He was excited to see the be-be and liked patting her (gently) on her head. Sandy and I were happy to have some play time with him as well!
Sorry for the delay getting an update to you all. We've been busy since the last one!! Where to start. Riley says hi!
Well, when Riley did her first blog post on Thursday, the doctors were starting to talk seriously about taking her vent tube out. Unfortunately she wasn't quite ready yet. The doctors decided that they wanted to try to wean her off of the nitric oxide over the weekend. She has been on the NO, along with oxygen, since birth. A broncho-dilator, it helps with her gas exchange and pulmonary pressures. Over the weekend, the doctors progressively halved her NO levels: 20, 10, 5, 2,5, 1 and then...none! Along the way, they had ultrasounds done on her heart to see what the effects of the reduced NO were on her pulmonary pressures. The results were great; the ultrasounds showed that her pulmonary pressures were about where they should be for a non-CDH baby, despite the reduced NO levels.
While the weaning was going on, Grandma and Poppa Trask brought Chase out for a visit over the weekend. He was excited to see the be-be and liked patting her (gently) on her head. Sandy and I were happy to have some play time with him as well!
On Sunday, we got word from the doctors that Riley would be ready for extubation on Monday or Tuesday. The doctors also showed showed us her latest chest x-ray. Her left lung is now almost as big as her right! The left lung will never be quite as efficient as the right, but the lung growth is contributing to her breathing, so this is a very very very exciting development that we weren't expecting.
I was ready head out to Boston from work on Monday if the doctors decided to extubate, but then Sandy got word that extubation was scheduled for early Tuesday. Grandma Coombs is up from Florida, so she watched Chase last night and I headed out to Boston so that I could be there early this morning. The doctors confirmed during rounds that Riley was ready to go!! We waited for a few hours until Riley graced us with some awake time, and then the tube was pulled! She is currently getting oxygen from nose cannulae and this is a major improvement over the ventilator. Some pictures are below of Riley without her tape mustache and Mommy having some quality time with her. It's such a joy for us to finally be able to hold her, along with doing some of the diaper changes.
The next steps are to slowly wean Riley off of her sedatives and heart medications which are administered through the PICC line in her thigh. Somewhere along the way, the PICC line will be removed and she'll be closer to being released to the floor (10 East). Once she's on 10 East, she'll work on learning to eat and getting stronger. We're still looking at a few more weeks at Boston Children's, but we are getting closer to bringing our baby girl home!
Thursday, March 10, 2011
Hello World
Hello All,
Mom and Dad have been slacking with updates so I figured I would write in one myself. Life in the MSICU has been pretty exciting lately. To start with, I went on a road trip yesterday down to IR so they could put the feeding tube down in my intestine instead of my stomach. They gave me a "happy cocktail" to make sure I didnt feel anything and boy did it work (shh dont tell mom and dad).
Also, the doctors have been talking and I heard them say that they want to take out my vent tube soon! This is so exciting for me! First, I wont have to deal with this tube in my throat that makes me gag any more, and way more excitingly, as long as I do well, Mom and Dad will be able to hold me. I think that will make them sooooo happy! Cross your fingers for this to happen this weekend!
I am getting used to the dose of sedatives I am on so I have been waking up more recently. Check me out with my eyes open! I can totally see all the awesome toys in my bed now too! Mom said that I have way more waiting for me but they don't all fit.
Mom and Dad keep talking about my big brother Chase. They keep saying he his such a cute little guy and they cant wait for me to go home with him. Im not sure he is ready for me though. I'm a pretty feisty kid as Im sure you have heard.
Well, it is way past my bedtime so I better get going. Cant wait to meet all of you soon!
Love,
Riley Mae
Sent from my mommy's iPad
Mom and Dad have been slacking with updates so I figured I would write in one myself. Life in the MSICU has been pretty exciting lately. To start with, I went on a road trip yesterday down to IR so they could put the feeding tube down in my intestine instead of my stomach. They gave me a "happy cocktail" to make sure I didnt feel anything and boy did it work (shh dont tell mom and dad).
Also, the doctors have been talking and I heard them say that they want to take out my vent tube soon! This is so exciting for me! First, I wont have to deal with this tube in my throat that makes me gag any more, and way more excitingly, as long as I do well, Mom and Dad will be able to hold me. I think that will make them sooooo happy! Cross your fingers for this to happen this weekend!
I am getting used to the dose of sedatives I am on so I have been waking up more recently. Check me out with my eyes open! I can totally see all the awesome toys in my bed now too! Mom said that I have way more waiting for me but they don't all fit.
Mom and Dad keep talking about my big brother Chase. They keep saying he his such a cute little guy and they cant wait for me to go home with him. Im not sure he is ready for me though. I'm a pretty feisty kid as Im sure you have heard.
Well, it is way past my bedtime so I better get going. Cant wait to meet all of you soon!
Love,
Riley Mae
Sent from my mommy's iPad
Tuesday, March 8, 2011
Tuesday 3/8 Update
Hello all!
I know it has been a couple days since we updated so here we go...
This weekend went by so quickly. I came down with the stomach flu on Saturday and by Sunday I was unable to sit up without feeling like collapsing. Thankfully I was able to go over to Brighams to be pumped full of three bags of fluid.
Riley has been doing well being weaned off the vent. We are currently on a PIP of 13 and going down to 12 today. We need to hit 10 to begin extubation talks.
Feeding is not going as well as we had hoped. Riley has thrown up about once a day since getting to full feeds. There are several reasons this could be happening including the fact that she prefers to lay on her tummy which causes pressure, she could be allergic to a med, or her stomach is just sensitive right now. Brian and I mentioned that we were afraid of her aspirating during this especially if she is on her back. Today they are going to try moving he tube down so the food goes into the intestines instead of the stomach. If it doesnt go easily (because her organs could still be jumbled) they will reevaluate.
We had an echo yesterday that shows Riley has alot of pulmonary hypertension and she has been put on soldenophil to try to dilate the vessels. This should hopefully help us wean her off the nitric she is currently on. We are being closely followed by cardiology so we are confident it is under control.
Brian went home this week to be with Chase. They were sitting on the couch last night and Chase pointed to a picture on he wall and said mama. He pointed to the next one and said dada. He then turned around, pointed at Brian and said dada with a huge smile on his face. Someone is happy to have his dada home!
Also, we are ok with visitors if anyone wants to make the trip. Please just let us know in advance. Hopefully you all have a great week!
I know it has been a couple days since we updated so here we go...
This weekend went by so quickly. I came down with the stomach flu on Saturday and by Sunday I was unable to sit up without feeling like collapsing. Thankfully I was able to go over to Brighams to be pumped full of three bags of fluid.
Riley has been doing well being weaned off the vent. We are currently on a PIP of 13 and going down to 12 today. We need to hit 10 to begin extubation talks.
Feeding is not going as well as we had hoped. Riley has thrown up about once a day since getting to full feeds. There are several reasons this could be happening including the fact that she prefers to lay on her tummy which causes pressure, she could be allergic to a med, or her stomach is just sensitive right now. Brian and I mentioned that we were afraid of her aspirating during this especially if she is on her back. Today they are going to try moving he tube down so the food goes into the intestines instead of the stomach. If it doesnt go easily (because her organs could still be jumbled) they will reevaluate.We had an echo yesterday that shows Riley has alot of pulmonary hypertension and she has been put on soldenophil to try to dilate the vessels. This should hopefully help us wean her off the nitric she is currently on. We are being closely followed by cardiology so we are confident it is under control.
Brian went home this week to be with Chase. They were sitting on the couch last night and Chase pointed to a picture on he wall and said mama. He pointed to the next one and said dada. He then turned around, pointed at Brian and said dada with a huge smile on his face. Someone is happy to have his dada home!
Also, we are ok with visitors if anyone wants to make the trip. Please just let us know in advance. Hopefully you all have a great week!
Friday, March 4, 2011
Friday Update
We are on full feeds now for Riley. She is getting her recommended dose of mommys milk each day and we couldn't be more excited about that. She had her first poop yesterday after starting the milk (she had pooped plenty before that), so we were excited.
It looks like the infection was fought by the antibiotics they started her on, thank God. As our doctor said, he was really nervous the first day she had symptoms, but we got very lucky.
As we expected, life here in the ICU is like a big roller coaster ride. Riley does well one moment and the next, her sat levels fall, her heart rate goes up and a slew of nurses, respiratory therapists and doctors come running in to bag and suction her. As a parent, it is a very scary thing to watch as much as we have. I think she just likes to wake us up every so often. We have figured out that Riley likes being on her stomach with her head turned to the right. Any other position and we quickly deal with falling numbers. At this point (and probably for the rest of her life) she is trying to show us who is boss.
Brian and I are doing well, and had an amazing visit with Chase yesterday. He wore his big brother shirt and kept saying behbeh (baby) all day. He met Riley and stroked her hair and back as nicely as anyone I have seen. He was so good! We were able to take him to lunch and then to a playroom and spent some quality mommy daddy time with him. Riley was also able to meet grandma and poppa Trask yesterday too.
Right before Chase left Riley was moved to a new room. She had been in an open bay area meant for the high risk ICU kids and was moved to a private room finally. This was wonderful as it will be more quiet for her and mom and dad.
Eventually we had to say goodbye to Chase which is always sad but we know we will see him again soon.
Wednesday, March 2, 2011
Tuesday 3/1 Update
Today was a little bit of a roller coaster ride. Riley had her epidural removed in order to prevent possible infections, and seems to be comfortable without much pain medication. She also had the bandage removed from her incision, which is healed already. She continues to do well taking Mommy's milk through her NG tube and the doctors plan to keep raising the flow rate until she is close to what she would normally be taking in from Sandy.
The doctors noticed an elevated white blood cell count in this mornings blood tests. After taking some additional cultures and a chest x-ray, the preliminary conclusion was that she has a minor infection in her chest. Apparently, this is not uncommon in babies that are intubated. So, Riley has been on antibiotics and slightly higher vent settings today. Her vitals and blood gases looked better tonight, so hopefully the drugs are doing their job and she is turning the (small) corner. As one doctor said, we're running a marathon not a sprint.
We continue to receive much appreciated support from family, friends and CHB staff. More updates to come as Riley's journey continues.
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